Before My Time

I gasped, trying to clutch reality, trying to stop the world from completely slipping from my fingers.  I can do this, I tell myself.  I cannot believe otherwise.  If I do then where will it end?  The world, my world, my life, everything will fall away, it will be the crash of a tower of bricks, a slight wobble here and there, the slow bend of the tower  but then the inevitable crash.  It will fall.  And all will be lost.

I tell myself to hold tight, I grip my hands tightly,  cramped-ridden knuckles that rarely seem able to straighten anymore, as if life, health, self, world could be something tangible, something that could be grasped, something that could be kept held of.  I can’t keep hold of them; they’re more slippery than fine sand grains.  And the tighter I grasp, the faster they are squeezed from my grip.  I cannot win.

I gasp, every breath is a struggle.  The physical world around me swims.  The ridged concrete path swirls in a blur of motion.  The metal fence posts alongside do tricks that no fence post should ever be able to master.  The world will not stay put.  It will not allow me to get a handle on it.  I cannot keep it still.  I grasp out at it but it moves, slippery and fast, and unreachable.  Everything is beyond me.

You’re not meant to get motion sickness walking.  But I do.  It’s not like I have mastered some locomotive state.  Or maybe I did once.  Once upon a time, I was able to keep up.  Keep up with what?  Life, self, health, world.  No more.  I am slower than the World’s Slowest Walkers.  I know.  They keep overtaking me.

I struggle to breathe, like an asthmatic at the end of a sprint.  But I have gone nowhere fast.

My body ridicules me.  Me, that self I dream of being.  I cannot be.  I am crippled and handicapped and fighting a body whose war I barely even understand.  I am conspired against daily.  I lose daily.

I no longer feel safe walking by myself.  I don’t have the breath to think let alone scream in defence.  I feel shaky, vulnerable, weak, frail.  I am not myself anymore.  I can’t walk out into the world with the bravado that I used to.  I can’t take the time to enjoy a moment of solitude or the world around me.  I am too busy fighting.  There are days when I walk so slowly past front gardens that I get to know each and every blade of grass by name.  I don’t admire flowers, they get boring when you’ve spent five minutes walking passed the same one.  They taunt me, moving free in a breeze.  They have more speed than me.  They move whilst I am motionless.  One day snails will overtake me.

I muddle words and can’t remember whether I had conversations out loud, in my head or in my sleep.  I can’t remember what needs doing or even what I have done.  I forget where I am halfway through a recipe.  I forget ideas halfway through sentences.  I forget.  I forget.  Me, who has always been a memory keeper.  Me, this is my role, this my usefulness in the world, because I can remember.  And I can’t.  What have I left?  I console myself with sarcastic humour, reminding myself that at least at some point I will forget that I ever even had a memory.  But at the moment?  Oh no, I remember.  I remember the glory days.

The glory days that never were.

A golden age only exists in nostalgia, a better time compared to current woes.

And I do remember that there have never been glory days for me, I have never succeeded, not even at being myself.  And now I feel perhaps I would have a chance but it is all being dashed away from, like that tower of bricks.  I cannot stop them falling, I cannot stop the present and I dread the future.

My hand shakes.  I am weak and vulnerable and pathetic.

This is not me.

This is not who I want to be.

This is not who I should be.

I forget names, faces become foggy.

I mix up all my nouns.  If I can even remember any.

I get my sentences backwards.

More vicar, tea?

I don’t know if the world notices but I do.  I notice.  I see every single mistake, every single failure.  I, who have tried so hard my entire life to hide my weaknesses, my problems, now have them writ embarrassingly large across each and every conversation and each and every day.

This is not me.

The slow, painful steps that I am taking through life and the world.

This is not me.

I sit motionless, lost, unable to find the strength to do anything.

This is not me.

I cannot form sentences.

This not me.

I cannot remember.

This is not me.

But it is.

It is who I have become.

I didn’t get a choice.

I would have liked a choice.

Because I would really like to have life back.

I want another chance.

But something tells me it’s too late.

The sand has tumbled from my hands, I never had much anyway, and it cannot be found again.

I have lost.

Everything.

I have lost me.

Loss of Self

(Can I tell you a secret?

I grieve.

There are moments when I am broken in spirit and overwhelmed by a profound sense of loss.  I try to remind myself that there are countless thousands, if not millions, of people who are in a worse position than I am but my heart won’t listen.  I put a brave face on to the outside world, set that stiff upper lip but all the time my heart is breaking.

Most people feel that it’s handing over your self-care to another person that causes a sense of loss, a sense of shame and a complete loss of dignity.  But the reality is that illness, chronic illness, will have robbed you of every last shred of dignity long before you get to that stage.  That dignity comes from our identity, our sense of self.

I cannot think of anything worse than anything to abandon self-care to a stranger, someone appointed by a remote, impersonal power through a collective, communal sense of duty to look after those unable to look after themselves.  There is perhaps slightly more grace in being cared for by loved ones but maybe that’s the point and I speak too rashly and harshly.  Think of just the nursing profession, strangers who dedicate themselves to the care of the needy and vulnerable.  Sometimes we do have to hand ourselves other to strangers, to specialists and to experts, who are best placed to help us.  I think what is needed is trust, we need to be able to build relationships, to connect and to trust, whether that person is a stranger or not, when we hand over the very last vestiges of our dignity and identity.  Perhaps the sense of shame comes only from myself.  A sense of failure too perhaps.

There is that moment where your life divides into two parts, the before and the after, that moment when a doctor or other medical professional gives you that diagnosis.  Perhaps you only hear incomprehensible medical names and terms, perhaps you only comprehend that sense of fear, dread and threat.  But what is lost, and will be lost, is your identity.

If illness only deprived us of being able to climb Mount Everest, of running a marathon every week, of being able to run six international businesses at once … well, wouldn’t that be bliss?  Few of us really would be impacted after all.  But illness, chronic illness, is so much more than that.

I don’t have that clear demarcation, I don’t have the privilege of ‘having been’, I have been ill all of my adult life and in some ways I know nothing else.  That makes me sad, sometimes I feel cheated of my potential, of being able to have a life that I choose.  I’m not one for self-pity but grief doesn’t always rationalise, it is a tidal wave of loss, from which there is no escape.

In fact, it’s when things are going better mentally, when I find a focus that I feel this loss the most strongly.  I cannot be who I want to be.  I cannot be who I am.  I disappoint and frustrate myself.  When I can see so clearly what I want to do, what I want to be and yet this mongrel-beast gets in the way, refuses to let me be, never mind achieve, I grieve.  I have found my feet in one sense but cannot crawl from the bed in the literal.

It’s absolutely crushing.

I don’t want to climb mountains, or run marathons or international businesses, I just want to be me.  All those things that I have worked so hard to achieve, I have worked so hard to find myself and to be comfortable in my skin, to have that dashed away from me, it’s heart-breaking.

And so often it’s the trivial things where I feel that sense of loss so keenly, the sort of thing that you wouldn’t ever think could really matter or be important.  Things like being able to cut vegetables properly.  But when you think about it, it is a skill and one that maybe you had to work at.  It is something small that says a lot about us, whether we cook, whether we enjoy cooking, whether we’re any good at cooking … Instead the sharpest knife becomes blunt and clumsy in uncoordinated hands, food mushes rather than slices, there is no technique and if half the pieces are of similar size, well then, that’s a miracle in its own right.  And all the while, there is that voice inside your head that tells you ‘this isn’t me’.

But it is.

Illness isn’t a straightforward, downward slope to the total loss of dignity either.  It often ebbs and wanes.  Sometimes this can be more painful; you can’t accustom yourself to a level of loss before proceeding, or descending, to the next.  What you can do one week, one day, one hour may quickly become impossible.  You can’t take anything for granted.  Each new setback is enough to make you howl.  If you had the energy.

Our sense of identity is tied so closely to the things that we enjoy.  Not being able to do the activities that we enjoy, not being able to eat the foods that we enjoy … illness leaves no aspect of us, of our identity, untouched.  But it’s not just about not being able to do the things that we enjoy, take for example my knitting.  I love knitting.  It’s one of the few activities that I can consistently manage, although in varying proportions.  But it’s so much more than just a simple activity; it’s so much more than just one of those things that I do.   It’s an expression of personality, of creativity.  It is the way that I express myself.  When a week goes by where I physically cannot knit, I feel that loss keenly.

I don’t know if illness, personified perhaps, does target those specific skills and those things that so clearly define us as us, sometimes it feels like it does, or if perhaps we just feel the loss more in those areas.  If you never had a particular skill or talent then you probably don’t notice or feel that loss so much.

I know that there are people whose memories are bad, totally fallible.  I live with one of them.  This means I have even greater responsibility as a memory-keeper, I remember my memories and those of others.  I’m known for my memory abilities.  I am a guardian of family history and stories.

No more.

I cannot remember what I did yesterday never mind last week.

I cannot remember words or dates or things that I need to do.

Someone will tell me something and I will wonder out loud how they know that.  They then tell me that I told them, just a week ago.

Behind me there is a great void of nothingness, a black hole where memories could and should exist but I remember nothing.

I feel a great sense of shame, embarrassment when faced with the reality of this loss.  Actually, it frightens me more than I care to admit.

In so many ways, this is a loss of self.  I’m losing a skill that I am proud (!) of and I risk losing my history.  In a way, I become homeless, that sense of belonging comes, in the greatest part, through memories and remembered connections.

I have a fear of losing things, my biggest fear is forgetting.  It is why I write, it is why I photograph.  I’m terrified of forgetting.  I always have been.  Memory, remembering is important to me.  And now I am faced with blank spaces, black holes and that nagging feeling that there really is something that should be in my head right now.

And it’s becoming more obvious.  It’s hard to hide your memory problems when you can’t remember anything.  I’m oblivious to what has gone before, I risk repeating things or putting my foot in it, like the example above.

Illness takes everything away from you that is precious, independence, skills, talents, memory.  There is no dignity in being ill, just a profound sense of loss.

I grieve.)

Convenient Food

It was a pretty amazing invention when you think about it, probably the best thing before and since sliced bread.  A simple container that took food transportation and preservation to a whole new level: the humble tin.

Tinned food is an asset; it’s ideal for emergencies and for those moments when the rest of the cupboard and fridge is bare.  Campers swear by the stuff but caravan-ers shake their head and mutter about towing weights.  You can have vegetables in and out of season, vegetables when you haven’t been to the shops all week.  You can have a meal in minutes.

Tin food.  Great stuff.  What a convenience.

But there’s a problem.

The usefulness of a tin is in its seal.

That seal stands between me and my food.

The tin opener and I are mutual enemies.

It hasn’t always been this way, although tin openers always have a bit of a temperamental reputation.  In the years of my independence, I’ve had to make sure that I have a soft-grip handled one for the moments that my paws get flimsy.  But recently it’s descended into all-out war.  It’s not pretty.

I latch the tin opener onto the lip.

This is usually the most successful moment of the entire operation.

It goes downhill from here on in.

The next trick is to turn the wheel.

I need at least two hands to turn the wheel.

Which rather begs the question of who is to hold the handle.

You need more than two hands to operate a tin opener.

Well, I do anyway.

So I jerk into an awkward dance between turning and holding.

You need to hold tight to get the teeth to bite in.

Guess what?

I can’t.

Not anymore.

Occasionally the teeth mush into the metal, I get hopeful.

Then everything grinds to a halt again.

There is a now a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

(Well maybe with a pinkie finger if I really wanted to try and put my uncoordinated fingers anywhere near the chewed-up metal edges).

It’s at about this point that, having spent an inordinate amount of time in this messy, stressful, exhausting business, my attention is caught by some disaster-in-progress on the hob.

I am now divided.

Do I abandon the tin which is now either spewing or spitting liquid in my direction with each painful twist and jerk as I persuade, sweet-talk, curse and manipulate the opener or, left to its own devices, sits crookedly on the worktop, slightly more bashed than when it first left the cupboard, the tin opener jutting out, jammed in the rim at some impossible angle?

Well my reactions aren’t quite what they used to be.

And neither are my decision-making abilities.

The disaster-in-progress risks ceasing to be in-progress and becoming a too-late.

I swerve, mostly mentally, between one contest and the other.

I can’t cope!

I am overwhelmed.

I, the tin and the rest of the food need rescuing.  Urgently.

Having gone through this very exhausting and dangerous process several times in recent months, I have a new strategy: I don’t open tins.  That’s husband’s job now.

I admit defeat.

I give up.

Although not graciously.

But then there was a glimmer of hope.

Some food tins have ring pulls.

I can open ring pulls.

I am triumphant in my new found talent, a moment of victory and conquest.

I need two thumbs to lever up a ring pull.

This means that I need to clutch the tin, which suddenly has acquired the animate ability to wriggle, between my two wretchedly weak paws and still have enough length and stretch left to manipulate my thumbs under what transpires to be a stubborn, stiff piece of metal.

Sometimes my thumbs win the fight.

Sometimes I have to adopt something that proves that I am indeed a higher being: a tool.

I grab the nearest thing that seems vaguely appropriate, a dinner knife or a teaspoon.

The ring pull is stubborn but so am I.

And I am armed.

With a teaspoon.

The fight is won.

The ring pull is levered up, victory is achieved!

There is a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

Like me, do you get a feeling of having been here before?

And that is as far as I can get.

The pride and jubilation of a battle won is quickly swept aside as the tin wins the war.  Again.

I am stubborn but I know when I am defeated.

I am defeated.

If I want to eat tonight, I will have to surrender; I will have to give the tin over to more capable hands.

Bitterness is not something that I easily succumb to.  Fortunately.  But there’s not much fun in being beaten by a tin of food.  And sometimes I’d just really like some baked beans.

Tinned food, hey?  What a convenience!

Welcome to the Real World

When speccy spoke of pacing the other day, my entire being sighed and nodded knowingly in agreement.  You see, pacing is something of a ‘buzz’ word in chronic illness.  Although it’s not some magical cure-all or panacea, it does rather let the ‘experts’ off the hook.  The responsibility is handed firmly back to the patient, they are to manage their own illness, it is up to them.

Whilst I firmly believe that self-awareness and self-management are important, if not vital, components of maturity, of adult life, this doesn’t quite seem fair.  There was a reason why ‘experts’ were invented after all.  To be left, abandoned, to your own devices can be isolating, frightening and threatening.

It’s sometimes said that the best gift you can give the chronically ill is comprehension.  Support and understanding are absolutely crucial and they have to come from external sources.  Yes, as individuals, we can offer ourselves support and understanding but it’s not the same.  In fact, can any individual really generate and sustain support, understanding, belief, appreciation or acceptance if there is none forthcoming from external sources, the community around them?  (And when someone is chronically ill, can they really physically support themselves?  If they could, they wouldn’t be the ill ones).  This would require almost unfathomably ridiculous levels of self-belief and self-confidence.  I don’t think many of us have those.

Besides, chronic illness eats away at your self-belief and self-confidence.  It destroys value systems.  Even if you never, ever doubted yourself before, it will make you doubt now.  Sometimes you will think that you’re going crazy.  That’s why external sources of belief, support and understanding are so important.  No man is an island, apparently.  We don’t need flattery or lying to, we simply need to be acknowledged, for our illness to be acknowledged.  Or better still, understood.  Appreciated even?

Perhaps, they, those ‘experts’, feel that this approach is temptingly flattering.  You are the expert, you know yourself better than anyone and the nature of your illness too.  You are the expert.  Empowerment in action, another favourite ‘buzz’ word of our times.

However, it carelessly disregards the reality, how the dynamics of self, relationships, community, society really work.  No man is a self-actualised island existing in splendid isolation, an unconnected self on a planet of unrelated life.  As if such an ideal were even possible.  Or healthy.  We humans are cities, places buzzing with connections, with a strong sense of past and a need for a planned, controllable, reliable future.  We have habits, customs.  We are often living to the full extent, if not beyond, of our resources.

When we fall ill, we bring a lot of baggage with us.  Our own expectations, hang-ups, complexes, fears and prejudices.  As well as those of everyone else too.  We cannot be expected to become a self-actualised island in the face of such odds.  Nor should it be required, we are cities after all.

(As a side note, isolation is an often recognised and accepted issue for the chronically ill, so it seems a little unwise to propagate it).

There are other ways too that pacing is fundamentally flawed.

Another situation where the term ‘pacing’ is popular and enthusiastically adopted is in sport.  (If there couldn’t be more difference between these two groups of proponents!)  Top athletes, marathon-runners, you name it, they all talk about pacing, it’s a wonder-word to them too.

However athletes do not exist in isolation.  They are part of a team.  And not just any team either, these aren’t necessarily just their loved ones who for the chronically ill will make up the bulk, if not the entire population, of a support team. Oh no, the athlete is surrounded by ‘experts’.  Whilst it is recognised that he knows himself and his abilities best, he turns to external sources to help manage and advance, he knows that he cannot do it alone.  There will be a coach providing one-to-one support, usually someone who has a wealth of experience and knowledge in a particular sport.  The best coaches know the ropes and they know them inside out, upside down and back to front.  They have the inside story on each challenge that an athlete will face.  And they know their athletes just as well.  They know how to get the best from their athlete, how to maximise their potential, when to push’em and when to ease off.  But these days, it isn’t just the coach who makes up the support team.  These days, there is a vast network of ‘experts’, professionals in diverse fields all bringing their knowledge and experience to bear, to allow the athlete to achieve his potential, there may be nutritionists, physiotherapists, masseurs, sport scientists, doctors, psychologists, administrators, legal experts, public relations specialists … the list goes on.  No athlete is an island.

So with all this support, knowledge, expertise and belief propelling an athlete forward, does pacing actually guarantee a win?  Well, think over some of the interviews you may have heard with athletes after some event or other.  You will hear them talking of peaking too early, of having had a bad day, of the weather being against them, of the altitude being unfavourable, of having two events too close together, of having had troublesome journeys or connections.  Even with all these experts behind them, even with all their own self-belief and training behind them, pacing is fallible.  Highly fallible.  It is not a science.  We humans generate too many variables and respond so differently and unpredictably to situations, even familiar ones.

One Swedish furniture company apparently tests all of their new sofas with a special machine which simulates someone, a rather large someone, jumping on the sofa countless times.  They are measuring endurance.  When those figures are produced, they can then guarantee their furniture for a specific period.

What does this have to do with pacing?  Well, the essence of pacing is endurance.  And how do you measure that in humans?  We are not identical sofas manufactured to exacting standards.  (In fact, I’m pretty sure that some of us feel like second-hand sofas anyway).  But it means that the test is no longer fair because not all the sofas can and will pass.  And think of that old relic in your sitting room, just because it’s rather old and sorry, are you going to throw it out?  Or will you overlook its faults, it weaknesses because it’s deliciously comfortable and been part of your family story for such a long time?

There are other problems too when it comes to measuring endurance in humans, not only are we all built differently but we’re not tested equally either.  The tests that a human faces, even in normal everyday life, are random.  There is no uniform test.  And the tests that humans face are not necessarily designed to be passed with flying colours.  And how do you measure endurance when humans have the unpredictable trait of responding differently in the same circumstances?

Endurance is really the baseline of pacing.  Pacing requires you to establish what you are normally capable of, what you can usually endure.  Once you have established this elusive baseline, you can pace yourself, not exerting yourself beyond this threshold and therefore not exacerbating your condition.  Eventually you will be able to build on the baseline, increasing gradually in baby-steps increments your abilities, your endurance, your baseline.

There is some truth, some science behind this.  But even experienced athletes can find that their baseline fluctuates and that sometimes there are just ‘bad days’.  How much more so for the mere mortal struggling with a chronic illness!

Endurance, I don’t think, can be quantified and measured in humans.  Endurance seems to be one of those qualities that meanders between the physical and the psychological.  There are few things that are clear-cut, black and white where humans are involved.  And whilst an athlete knows that they can run this fast for this long or whatever else their discipline requires of them, a purely physical endurance, how predictable or reliable is chronic illness?  This athlete is an individual with high levels of self-belief and self-confidence, yet whilst he may be able to endure physically, the psychological can knock him for six.   Chronic illness does not neatly exist only in the physical, or mental, there is a great deal of psychological.  We bring all that baggage with us, remember?

So if endurance cannot be quantified and established, fixed at a set rate even one individual, how can pacing really be expected to work?

But then it gets more complicated.  We humans don’t exist at some monotonous baseline; we peak and relax, physically and psychologically.  Our lives are varied.  Even if we had that baseline fixed and we could measure everything we did against it, is that really how humans live?  Just because we are ill, even house- or bedbound, we are humans with a strong sense of will.  We want to do things.  We live in a society where our value is dependent on activity.  We measure success by what we do, how much we do.  There are things that must be done.  Life doesn’t stop when you become ill.  There are still all of these everyday responsibilities to be taken care of.  And there are times, when we just desperately want to do something, maybe to alleviate some of the boredom and frustration of being so ill so much of the time, maybe it’s because we just want a glimpse of our old lives.  We rarely say no.  We’re not programmed to say no.  And so our pacing suffers, even if existed in the first place.  Real life continues around us and continues to have expectations of us.  We also have expectations of ourselves too.  Modern society is not renowned for its measured pace.  And there isn’t much allowance given for the chronically ill.  Pacing goes out the window, you have to live.

Whilst Chronic illness can be boring and frustrating, it isn’t monotonous.  Whilst real life continues to throw challenges us, things that we must do regardless of our health or energy levels, chronic illness itself doesn’t exactly help matters either.  Few chronic illnesses are predictable.  They are not reliable.  Most of them aren’t even quantifiable.  So how can you apply pacing to the untameable?  The worst of chronic illness is never knowing quite how something will affect you until it’s too late.

Pacing allows a veneer of delusion that someone is in control.  That the beast of chronic illness can indeed be tamed, be domesticated and invited into polite society.  It would be a comforting notion if it wasn’t so obviously false.  But yet countless patients dutifully try to implement the impossible, they try to pace themselves, in an almost vain hope of recovery.  If recovery or remission does occur, it rarely seems to be anyone’s hands.  There is no success guaranteed with pacing and yet the patient has had to take full responsibility for the management and successful outcome of their illness.  Is this failure or just stupidity?

I don’t think that pacing can be that panacea; I don’t think it is the solution.  There is an awful lot more involved in humans, in illness and in real life.  Pacing is the equivalent of a highly restrictive calorie-counting diet; it’s punitive and doesn’t take into account those ups and downs, the feasts and famines of real life.  Oh, and they haven’t managed to invent the calorie either.  Pacing is a farce.

We need to be realistic.  We do need to recognise our personal limits and accept that these will often vary.  We need to recognise and accept that if we choose to participate in one activity then it will often be at the cost of something else.  We cannot have everything.  Sometimes we get a look at the cake but it’s rare that we get to eat it.  We need to accept these things for ourselves, to reject all the baggage and activity-dependent value systems that we were brought up with and are surrounded by still.  But we are not islands; we need the people around us to do the same too.  We need their support, belief and understanding in order to live, to be allowed to live at our own pace.

The Oh-So-Long Symptom List

Neurological Signs and Symptoms:

• Inconsistent central nervous system function
• Vertigo and disequilibrium, for example a sensation that your surroundings (or you) are spinning wildly and vertigo may also be expressed in a milder form as an inability to watch TV or to read (or knit!)
• Temperature dysregulation
• Poor tolerance for hot or cold environments
• Hyperacusis (sensitivity to noise)
• Photophobia (pain/relapse on exposure to light)
• Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes
• Visual disturbances such as blurred vision, blacked-out vision and wavy visual field
• ‘Sensory storms‘ (while conscious)
• Fragmented sleep
• Difficulty initiating sleep
• Lack of deep-stage sleep
• Disrupted, chaotic or reversed circadian rhythms
• Extreme intolerance to vibration or movement
• Sudden loud noises can also cause a startle response (flushing and a rapid heartbeat)
• Tinnitus
• Simple partial seizures which do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensations; somatosensory seizures, autonomic seizures, focal motor seizures, auditory seizures, visual seizures
• Complex partial seizures: episodic dysphasia/dysphagia (incomprehension of speech and inability to speak), olfactory hallucinations (smelling curry, for example, wherever I am)
• Overload phenomena
• Unrefreshing sleep (waking up feeling worse than when you went to bed)
• Hypersomnia
• Dysania (doesn’t that sound like a yoghurt or some branded water?)
• Sluggish focus (visually), an inability to focus or accommodation difficulty (difficulty switching from one focus to another)
• Vision reversals
• Vision clouding
• Intolerance of extremes of hot and cold weather
• Changes in barometric pressure can cause night sweats and spontaneous sweating during the day
• Insomnia, migraines, irritability or generally ‘feeling off’ a day or two before the weather changes
• Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles

Vascular and Cardiovascular Signs and Symptoms:

• Chest pressure, heart pain and a fluttering/straining heart
• Postural Orthostatic Tachycardia Syndrome
• Feet burning painfully and turning blue/purple on standing (Raynaud’s phenomenon)
• Pain/discomfort/poor digestion following meals
• An exacerbation of symptoms on orthostatic challenge (maintaining an upright posture) beyond certain limits. (Lying down markedly improves symptoms for M.E. patients).
• Orthostatic light-headedness or  blackouts
• Oedema (swelling of the hands and feet)
• Extreme pallor (usually just before or during a relapse)
• It has never been investigated whether I suffer with more specific problems to do with low blood pressure, high heart rate, sleep bradycardia, arrhythmias or reduced circulating blood volume

Cognitive Signs and Symptoms:

 

• Word-finding difficulty, incorrect word selection (paraphasia) is common, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning
• Commonly used words become hard to retrieve
• ‘Scanning’ or disjointed speech
• Speech reversals
• Difficulty comprehending speech or delayed speech comprehension
• Handwriting changes (this waxes and wanes with the severity of illness)
• Difficulty writing or comprehending text
• Difficulty with even basic mathematics (dyscalculia) (although somewhat difficult to prove in someone who has trouble counting higher than thirty!), an inability or difficulty to do simple additions and other calculations, to count money, add up columns etc
• Difficulty with multi-tasking and simultaneous processing
• Impairment of concentration, maintaining a reasonable level of concentration on a task for even a short period of time may become extremely difficult and sometimes impossible, there is a need for mental micro-rests
• Difficulty with spatial perception, for example a loss of co-ordination or clumsiness, difficulty in judging distance, placement and relative velocity (caused by proprioception dysfunctions, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition)
• Extension or quick rotation of the neck can cause dizziness (also due to proprioception dysfunctions)
• Difficulty with sequencing, an inability to look up words in a dictionary, organise files or look up phone numbers
• Difficulty  with memory including: making and consolidating new memories, recalling formed memories, and with immediate and delayed visual and verbal recall (e.g. facial agnosia); short term memory problems may lead to forgetting what they are doing to such a severity that I am unable to finish a sentence
• Inability to learn new tasks and forgetting how to perform routine tasks
• May need extra sensory cues to complete tasks, for example having the light on when before the task could be done by touch alone, or can understand a conversation face-to-face but not over the phone
• Cognitive slowing
• Difficulty with visual and aural comprehension
• Difficulty following oral or written directions
• Trouble distinguishing figure from ground and speech comprehension difficulties.
• Word, letter and short term ordering problems, for example; transposition – reversal of letters or numbers, words or sentences when speaking or writing (pseudodyslexia)
• Agraphia, inability to locate the words for writing
• Problems with reading (alexia) or word blindness; I can still read but what is read is not comprehended and cannot be compared with known information already stored
• Despite actively listening, the information simply does not register at all or must be repeated several times before it registers
• In speaking, my syntax is askew often
• Speech comprehension is delayed which can result in long pauses, interruptions, mistiming of responses and apparent non sequiturs
• Difficulty or confusion with following timetables or keeping scheduled appointments
• Loss of the ability to block out extraneous and unwanted information and noise
• Loss of the ability to distinguish noise from required information and tend to shut down all intake after minimal prolongation of the information signal
• An exaggerated response to even small amounts of additional input or stimulus (light, noise, movement, vibration) is common, causing incoming messages to become scrambled or blurred resulting in distorted signals and odd sensations (ie. low level seizure activity)
• Even very low levels of light or noise etc. can also cause an exacerbation of other symptoms, or of the severity of the illness generally
• Altered time perception (losing time), feeling ‘spaced out’ or ‘cloudy’ or not quite real somehow
• Abstract reasoning dysfunction; difficulty organising, integrating, and evaluating information to form conclusions or make decisions
• The brain becomes unable to maintain wakefulness; there can be a difficulty in maintaining full consciousness for more than a few seconds, minutes, or half-hour periods at a time
• Volitional problems: difficulty starting or stopping tasks, or switching from one task to another (a neurological dysfunction where the body does not respond appropriately, or quickly, or without difficulty, to the minds commands)
• Agitated exhaustion (neurological in origin)
• Emotional symptoms include: mood swings (emotional lability) – crying easily etc. or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt, there can be an emotional flattening or situations may be erroneously interpreted as novel (due to prefrontal cortex dysfunction)
• Emotional symptoms in M.E. tend to be linked to exacerbations in physical symptoms, there are often not environmental triggers
• A worsening of symptoms (including cognitive function) with cognitive exertion beyond a certain level

 

There is often a marked loss (20 points on average) in verbal and performance IQ (fortunately I never have had to sit an IQ test)

Greater difficulty with auditory comprehension than visual is common (ie, with these ears of mine, I’m stuffed)

Digestive Signs and Symptoms:

• Oesophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back) or oesophageal reflux (heartburn)
• Difficulty swallowing (or an inability to swallow)
• Great thirst or increased appetite
• Food cravings or lack of appetite
• Inability to tolerate much fat in the diet (gallbladder problems)
• Changes in taste and smell
• An increased sense of smell or bizarre smells (for example, the week I could smell curry everywhere, it was very odd)
• Strange taste in mouth (bitter, metallic)
• Multiple new food allergies and intolerances (I can’t eat garlic anymore.  And cucumber and watermelon are problematic).
• Bloating, tenderness, discomfort
• Abdominal pain
• Nausea
• Indigestion
• Constipation
• Alcohol intolerance is common (this also waxes and wanes but can be frustratingly unpredictable)
• Feeling ‘poisoned’ and very ill

Endocrine and Neuroendocrine Signs and Symptoms:

• Loss of thermostatic stability – suddenly feeling cold in warm weather, recurrent feelings of feverishness or chills or hot flashes particularly involving the upper body
• Low-grade fever may occur following exertion
• Temperature fluctuation throughout the day (unproven abnormal temperature but the sensation is there)
• Cold hands and feet, sometimes on only one side
• Sweating episodes (profuse sweating, sometimes even when cold)
• Swelling of the extremities
• Loss of adaptability and worsening of symptoms with stress due to endocrine dysfunctions
• Hypoglycaemia or hypoglycaemia-like symptoms (problems with blood sugar regulation/low blood sugar)

Muscular, Pain, Exertion and Physical Activity Signs and Symptoms

• An exacerbation of symptoms with physical activity beyond a person’s individual limits, and a worsening of the illness generally (etc.) with continued overexertion
• Severe muscle weakness (paresis) or paralysis
• Muscles will often function normally to start with, but pain and weakness (or paralysis) develop after short periods of use and then take 3, 4 or 5 days (or longer) to resolve (normal muscle recovery is around 200 minutes
• Problems arise from sustained muscle use – it is a pathologically slow or impaired recovery of muscle after exercise (metabolism of the muscles), therefore I may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times
• Muscle weakness/paralysis affects all muscles/organs, including the heart, eyes and brain
• Dyspnoea with overexertion
• Erratic breathing pattern
• Loss of the natural antidepressant effect of exercise
• Inappropriate signs of immune system activation can be brought on by overexertion (i.e. flu-like symptoms)
• Persistent coughing and wheezing
• Worsening of symptoms generally caused by a hypersensitivity to light, sound, vibration, movement, temperature, odours and/or mixed sensory modalities
• Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)
• Muscle pain, twitching and uncontrollable spasms
• Difficulty breathing and air-hunger
• Difficulty swallowing or chewing
• Paraesthesia
• Polyneuropathy
• Myoclonus
• Onset of a new type of headaches, severe or pattern of headaches is common, often associated with neck rigidity and occipital pain (pain/pressure felt at the base of the skull, the top of the neck) and/or retro-orbital eye pain (pain behind the eyes) and also sometimes pain behind the ears (or one ear).
• Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest)
• Hypoglycaemia headaches (generalised prickly ache over the top of the head) (I had wondered what the nice prickly headache thing was about)
• Sharp transient ear pain
• Deep itching in the ears (I just learnt that could be a symptom today!)
• Significant (can be extremely severe in M.E) myalgia (pain) in joints is often widespread, especially knees, hips and fingers; sharp, shooting, burning or aching pain
• Gelling (stiffness) in the joints that develops after holding a position for awhile
• Aching in the joints
• Gait abnormalities and a difficulty with tandem gait
• Inability to form facial expressions leading to a ‘slack’ facial appearance, almost Parkinsonian
• Spasms of the hands and feet which can lead to ‘clawed’ deformities
• Spasms in the neck which cause the head to twist to one side
• Some cogwheel and leadpipe rigidity
• Slight hesitation in movement
• Severe spike-like pain, usually in the main muscle mass in the leg; extensors or flexors,  commonly described as feeling as though a nail or a knife had been stuck into the area
• Formication (another ‘new’ one learnt today whilst doing that, whilst many languages use ‘ants’ to describe pins and needles, I am often very aware of a different sensation to pins and needles, it does feel like being bitten or stung by ants, a burning, itching and crawling sensation)
• Allodynia – for example, the weight of the bedcovers becomes ridiculously heavy and painful
• Problems with nails such as vertical ridges, bluish nail bed, brittleness
• Marked weight gain or loss (often independent of dietary changes) (particularly as a teenager)

 

Immunological Signs and Symptoms:

• Lymphadenopathy
• Recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)
• Very severe throat pain, scratchiness and tenderness which often worsens with exercise, exertion or before relapses
• Increased or decreased susceptibility to secondary infections, a tendency to catch either every virus going around or to ‘never catch anything’ depending on whether the immune system is under- or over-active (which changes dependant on which stage of the illness the person is in)
• Infections also last longer, can be more severe and occur more frequently and may also cause relapses either concurrently or just after the initial infection
• Reactions to chemical smells
• Chemical sensitivities may occur to indoor and outdoor chemical air contaminants; can produce allergic reactions although not all chemical sensitivities are IgE mediated, may also cause an exacerbation of other symptoms
• Worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to many varieties of food (and food additives) and to airborne allergens
• Hair loss and poor quality regrowth
• Skin rashes
• Dry and peeling skin
• Spontaneous bruising (aha!  I have long been plagued by a Murphy’s Law state of bruising, I rarely seem to come up in bruises when I bash myself but I find random bruises that have no apparent cause all the time)
• Flushing of face (my face is very red most of the time actually, I can’t use blusher anymore)
• Finger pads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (my hands often look like I’ve spent far too much time in a bathtub)

Oral Signs and Symptoms:

• Dental decay and periodontal disease (gum disease) are much more common than in the general population
• Frequent canker sores (I thought that this was something to do with horses, but hey!)
• Temperature sensitivity in the teeth
• Pain in the teeth
• Tooth-hypersensitivity pain

CO-MORBID ENTITIES: 

• Secondary or reactive depression (as with any other debilitating chronic illness) (actually primary depression, it commenced before ME but they don’t get on well)
• Irritable Bowel Syndrome
• Raynaud’s phenomenon (poor circulation) (symptoms of but never been investigated)
• Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand) (possible as have symptoms of but never been investigated)

It sucks, doesn’t it?

(Information has been mostly drawn from the highly information Hummingbird website, many thanks to its authors).

That Mongrel-Beast Actually Causes Quite a Few Problems

My usual technique for dealing with illness is to ignore it.  Well, it might just go away.  And I’m used to blaming the psychological for a lot of my problems, for example, I say, ‘I’m lazy’ or ‘I can’t be bothered’.  But I’m growing in awareness, both of my main physical condition (ME) and of myself.  I know now that I’m not lazy but I’m still reluctant to take on board the fact that perhaps that mongrel-beast does actually cause me quite a few difficulties.  I suppose, perhaps, it partly goes back to that very screwy idea of ‘deserving to be ill‘.  I just tell myself, and anyone else, that ‘I’m just making a fuss, it’s nothing really’.  And that’s how I see it and how I live my life.

But the problems don’t just go away if you try to ignore them.  They’re still there.  Misunderstood, mislabelled, mismanaged.  It’s not a good recipe for success.  I have to face up to the fact that the mongrel-beast is ever present, that all those queer symptoms that irritate  frustrate and confuse are probably its fault.  Others, unfortunately, have just become my ‘normal’, I’m so used to feeling one way or another, one thing or another, that I scarcely appreciate that most people don’t actually feel that way, or ‘thing’.

I don’t like ignorance.   I do agree that knowledge can be power.  It can inform and educate.  And that’s what is desperately needed in these neurological conditions and ‘invisible’ illnesses such as ME.  It would be hypocritical of me to continue denying its existence in my life.  I cannot preach the need for awareness when I am steadfastly refusing to be aware.

Awareness does have its downsides, of course.  It can overwhelming,  frightening.  It’s almost like that moment when you first receive a diagnosis (not that ever happened in my case), the ground becomes unsteady and you find yourself confronted with a whole new reality, future, lifestyle … everything.   This condition is all-pervasive.  Being an ostrich doesn’t change that.

I preach also for tolerance, and I don’t necessarily use the word in the modern sense of ‘permissive’, for me, it’s a generosity of spirit and understanding and appreciation towards your fellow man.  How can I expect others to be tolerant when I am so hard on myself?  Again, it would be totally hypocritical.  I don’t do hypocritical.

Something has to change.  I have to change.

I have to face up to reality, to be tolerant to myself, to offer myself the understanding and appreciation that I so willingly give others.  I don’t make excuses as if they have no responsibility for their actions but I do understand and appreciate that there are, at times, extenuating circumstances.   I don’t get upset with you personally when your behaviour is generated, triggered by illness, stress or something out of your control.  I just ask that you acknowledge it and, if necessary, apologise afterwards.  Do I do the same for myself?

I preach also inclusion.  I don’t think that illness or disability should ever be cause for exclusion.  Sure, you may have to do things differently or a different pace, but I don’t believe that illness or disability is ever a write-off.  Yet, I hide my own problems.  From shame?  Perhaps.  Because I want to exist in the world on the basis of other terms, preferably my own and not this mongrel-beast’s?  Perhaps.  It’s kind of complicated!  But inclusion means allowance and I’m not allowing myself to be or to show the actual reality.  I am discriminating.  That is not tolerance.  I am judging.  That is not kindness.

I cannot hold myself responsible for something beyond my control, I cannot take responsibility or blame for a life or illness that I never chose.  Or even probably provoked.  I have to be forgiving.

And yet, even as I come to appreciate the all-encompassing nature of this mongrel-beast, I can also start to differentiate, between me and it.  I can see more clearly who I am and what the illness is.  Believing, understanding and appreciating actually frees me up.  I can be true to myself.  Just in difficult circumstances.  I don’t have to be the illness, I can be myself with an illness.

And most important?  I can start to take myself seriously.  Sometimes, it feels like no-one has ever taken me seriously.  And perhaps as a child, that does have to start as an external process, someone has to believe in you.  But as an adult, it’s up to me.  The first step is that I have to take myself seriously.  Then it’s up to everyone else.  Again, there’s that hypocrisy.  I cannot expect others to take me seriously when I am not taking myself seriously.

So today, I compiled a list of my symptoms, all the ones that I have ever had thanks to mongrel-beast.  It was hard work, not least because mongrel-beast is very keen on cooperating on such cognitive tasks (it doesn’t even like spelling or typing) and also because I had to face reality.  Reality is not the nicest thing in the world.  It’s kind of like looking in the mirror with your glasses on.  Not good.  But you can’t always avoid it.

I’m going to post the list separately because it is rather long and no, I really don’t expect any of you to trawl all the way through!  (Especially as I rather suspect, it’s full of mistakes and typos). Instead, it’s going to be a sort of testament.  A reality check, if you will.  For myself mainly.

I worked through the symptoms section on the Hummingbird website, it’s thorough and comprehensive.  I could say that I have learnt lots of new words but the reality is that I have immediately forgotten them.  I’ll try to link definitions to some of the stranger (mostly Latin-ish) terms.

I’m also quite glad that I went with bullet points and not numbers, it could have got a little (actually, very) frightening!

Psychosomatic is Just an Excuse

My old (though not in age) doctor (our GP, I don’t get to see a specialist) started out believing that ME was just another name for hypochondria.  I like him though and we have a good working relationship (ie I go in and ask for a prescription or a referral and he gives it to me).  We’ve been on a long journey since then though and I have since taken the unbelievably brave step of changing GP to a more local practice (my theory was ‘it’s better the doctor you know’; other people tend to substitute another noun in that aphorism).  My ME was under the care of the previous GP for fourteen whole years.  That’s half my life..  I’m now at fifteen years and if I really wanted to, I could always start rounding myself up to two decades of ME.  (I don’t and I won’t because that’s just a little too depressing when you haven’t even reached thirty yet).

I don’t know if since my own ‘diagnosis’ (or first submission of symptoms, diagnosis was never forthcoming), he now has other ME/CFS patients.  After all, it’s become a slightly too popular catch-all diagnosis in some cases now.  An umbrella term for those patients that doctors don’t quite know what to do with.  It’s not really helpful for either that patient or for those genuinely suffering with the condition(s).  As I’ve said before he’s never officially diagnosed me.  I wonder if he would now diagnose others.  (I went to him with the illness defined as befits the above working relationship).  He doesn’t ask about it and I don’t talk about it.  Just like everyone else.

 After a while (we’re talking years) he upgraded me.  No longer was ME hypochondria, many thanks, no, it was now a psychosomatic condition.  Cheers.  Much appreciated.

This came up in conversation with my mother a little while back because she felt that I should actually talk about my ME symptoms to the doctor (ie because she had finally noticed after a couple of years that I have a major pigment issue on my forehead, it’s kinda like alien freckles).  I explained that there was little point as I was only suffering from a psychosomatic condition as far as he was concerned and we spent as little time as possible discussing the matter.

She actually felt that it was a good thing.  Um, excuse me?  She said that at least psychosomatic meant that I was ill.  Yeah, kind of.  Psychosomatic means the physical manifestation of a psychological illness, you know like when some people are stressed they have a gyppy tummy or come out in a rash or have a headache.

Psychosomatic is just another excuse for not taking me seriously.  Psychosomatic is just another name for crazy.  *

(* NB.  I might be crazy in other contexts admittedly).

Testimony from a Bad Day

This is a post that I wrote many months ago when I was really struggling, it never got posted for some reason.  Today, I’m struggling again and fearing what that means.

Whilst I cannot pick out the threads that Depression weaves through my life and thoughts, I am very aware of the limitations that ME puts upon me.  I know how my life could and would be so different if I didn’t have to fight this mongrel-beast every day.  However, I doubt myself and the severity, sometimes even the existence, of my illness.  Maybe it doesn’t help that ME is shrouded in confusion, political intrigue and complete incomprehension and lack of care.  Maybe it doesn’t help that people don’t take me seriously.

This is how my life gets.  Judge for yourself whether I’m making it up or whether I can really just try harder.

Do people really awake refreshed and eager for their day or is that just some fairy tale or something that only toddlers in on the secret of perpetual energy and motion know about?  Some mornings I wake and get out of bed in one move, perhaps my brain hasn’t quite woken up yet and told my body how and where it hurts.  Sometimes the pain, the ache, the stiffness kicks in as I round the corner of the bed.  Sometimes I can get all the way to the bathroom and back.  Maybe it’s because lying itself just gets so painful that my body is just glad to be stretching, moving again.

I feel every bump, dip and metal spring of the mattress, I feel every crease and wrinkle in the sheets, some nights my best friend of a duvet becomes a suffocating mass squashing the air out of me.  It’s just as well that I’m as flabby as this otherwise I’d have my bones to contend with too.  As it is, my joints can’t take their own weight and pressure and whichever side I lie on goes numb so quickly, fighting poor circulation and pins and needles all the night through.  I can’t regulate my temperature so even in the middle of summer (if we have with appropriate temperatures) I can find myself needing a hot water bottle, clutching it tight because I’m frozen through.  Other times, cold nights even, I will suddenly be  boiling hot, almost feverish and throwing the covers off.  Other times again a heat source such as a hot water bottle will scald my exterior but do nothing to take the chill away, it’s truly disconcerting having both extremes of temperature at once.  Lately, I’ve been finding that I don’t have enough strength to sleep on my side, I was using an arm to brake myself, hold myself up but I can’t even do that anymore.  I fall in a crushed tangle and I find myself more often or not sleeping flat on my face, which doesn’t help the breathing or the overheating, with my two firsts up by my head, baby style.  Babies can’t hold themselves up either.  It’s pathetic and uncomfortable.

I know a lot of people seem to think that it’s the norm to take a shower every morning, as if you’d self-implode in a miasma of bacteria for one missed shower.  Well, sorry to break it to you, ME will change that for sure.  Sometimes I have to think so far ahead, planning not just for each stage of my toilette but the rest that has to be calculated to allow me to make it out of the door in one semi-civilised piece that I have my shower the night before so I have plenty of night hours to sleep off the effects.  I rarely have one in the morning anymore.  Mornings are too much.  Especially if I’m expected to be out and about.  If not, it might be the middle of the day like some slovenly adolescent, especially in midwinter when the bathroom is freezing cold.

The shower poses particular changes.  When I stayed at someone’s recently I realised however that I should be very grateful that we have a shower tray rather than a bathtub.  I could barely climb in and out of that!  The biggest problem is the amount of energy showering requires; there are the standing and the heat and the steam and then the cold afterwards.  I can’t stand for very long at all.  And I’ve already mentioned that I struggle to regulate my temperature.  Sometimes I only realise how dead and cold my feet are when I feel the scalding water on them, slowly bringing them back to partial life.  Sometimes I have to turn the water hotter because it feels too cool.  I worry that one day I will get burnt.  I’m glad too that we have a shower that you can leave the temperature set rather than have to turn it through from off to hotter, I trust blindly that the temperature is the same as yesterday.

 After nearly every shower now, I end up resting on the bed afterwards.  Then there are days when I’m not well enough to take a shower at any point, even with nothing else to do.  I struggle with this, guilty because of this culturally induced belief of miasma.  I hate not having clean hair.  Even when I’m Depressed, unable to motivate myself to anything, I wash my hair.

Even if I take a shower the night before, my morning schedule still has to be simplified and reduced to the barest of elements in order for me to be able to manage a morning commitment.  Sometimes I get everything ready the night before and sleep right up as close to possible as to when I need to leave.  Other times it seems to work better that I get up about an hour earlier, do what I need to then have a nap before going out.

Just writing about getting up is exhausting!

There are so many things that need doing, so many things that I desperately want to do.  I lie or if I can, I sit up, in my bed and see the reminders of these things around me.  How easy it would be to pick up a book or a duster!  But is it?  I don’t even have the strength for that.  And it makes me feel wretchedly useless.  I lie thinking that I need the toilet and it takes me half an hour or so to summon the strength to get out of bed.  I walk slowly, stiffly to the bathroom then to the kitchen to wash my hands.  I’ll grab a drink or something whilst I’m up so I don’t have to get up again.  And then I have to collapse on the bed.  Exhausted.  For what?  I’ve done nothing.  I’m hungry but I don’t have the energy to prepare some food.  I go without.  Or wait until the next bathroom trip to grab a snack.  The washing up and washing piles higher.  But I can’t lift or stand.  Nothing gets done because I genuinely can’t do it.  It breaks my heart and destroys my soul every single day.

I’m so glad that we have a flat, all the rooms are close together and there are no steps between levels.  I can’t do stairs anymore.  And when I do have to go out then gravity usually helps me down, I don’t have to worry about the slow haul up the stairs until I come back.  Which is just as well or I’d never get out.

I can’t follow instructions anymore, even recipes.  I forget where I am and what needs doing next when I’m preparing the simplest of dishes.  Who forgets how to boil pasta and stick commercial sauce on the top?!  It’s ridiculous, stupid even.  And I hate it.  I can’t open lids and I can’t grip and turn tin openers.  I struggle to lift a pan of pasta only because it’s my responsibility to feed us both.  Graters are difficult too, dangerous at times.  I can’t slice cheese much less anything else.  The world’s sharpest knife might as well be blunt in my weak and clumsy grip.

I could go on but I don’t have the energy or the courage to face anymore things that I can’t actually do anymore.  It breaks my heart, and even my soul.  ME isn’t a choice, ME isn’t me.  But this is my life.

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Bagged

Bags, like anything else we wear, say a lot about us.  Are we fashionable?  Do we have money to blow?  Are we practical?  Are we likely to be accompanied by nappy-sporting, snot-bubbling juniors?  Some don’t even carry a bag.  It’s mainly males.  Our society tells them they don’t need bags.  But they invariably end up having to borrow or use something from a woman’s bag.  And occasionally letting slip at the same time that they’d rather like it if they had a nifty container to hold the mandatory phone, wallet, keys, junk combo that they tote around in bulging pockets or trying to desperately grip onto in clammy paws, waiting for that ridiculously expensive latest model smartphone to hit the deck.  Again.

Actually, I know of women who don’t carry a bag either.   It seem a little strange the concept of the bag-less woman, as if something vital was missing from her or as if she somehow wasn’t quite complete.  Our society dictates that women carry bags, an essential rite of passage along with ear-piercing, court shoes, cutting your hair short and goodness knows what else.  (I’m not exactly sure, I never did quite get the whole young lady thing.  Still don’t).  One of my friends never has a bag on her but once you get to know her, you’ll know why she’s never parted from her coat.  That coat is an incredibly complex filing system where she has cards, money, receipts and all sorts of useful things stashed in all the many pockets.  It’s almost a Mary Poppins trick, watching her extract things.

Pockets are good.  (And doesn’t there seem to be a gender bias too when it comes to those?  Other than jeans and outdoor wear, apparently women don’t need pockets.   Ever).  I like pockets.  Pockets have their uses.  But I’m a sucker for a bag.  I’ve always liked bags, I like putting things in bags, keeping things in bags and storing things in bags.  It might be genetic.  Apparently my grandmother had the same tendencies, always armed with at least a half-dozen carrier bags at one time.

I am at least a little classier.  I’m rarely toting a carrier bag, although cloth bags definitely have their uses, especially as overflow departments.  But I always have a bag, or two, with me.  I can’t really imagine going anywhere without my bag, my life is in there, plus a few other half-dozen things.  Recently, I have made progress.  Lately, I will walk to a single appointment with just wallet, phone, knitting, other vital things maybe, probably food, all chucked haphazardly in one simple cloth bag.  I have even managed to walk up to the corner shop with just my wallet, not even my phone.  But I like the comfort of having my life with me, I like being able to deal with the crises that do occur randomly and sporadically (and even sometimes regularly) in my life.  I think also because I have complex health problems, I’m always going to be likely to need some stuff.  Not often always, but maybe.  My bag is something of a lifeline.  Physically and psychologically.

The reason of course that I’m having to carry less is because I find, regretfully and almost shamefully, that I have got a lot weaker lately.  I’ve never had brilliant arm strength, I have to carry my load pack-style to be able to get anywhere.  But I could always carry a pack.  My record was 26 kg.  These days, I’m struggling with everything.

Only being able to carry a load on my back means of course that shoulder bags are out.  Yes, my handbag is a backpack.  It has been for a very long time.  Because I’m realistic and practical, I know what my strengths are and I know that I don’t have to be fashionable.  (I can’t even see the point of trying when I look at the most of the pointless specimens that pass my handbags on the high street).  I even took a backpack to my wedding, much to my mother’s horror.  She tried demoting me to a little satin slip of a clutch.  I wasn’t impressed with the idea of a bag that needed to be chained to your hand the whole time, it’s not really my style.  I’d rather be doing other things, even talking requires hands in my world.  There was also the question of size.  I even had to carry an inhaler back then.  This thing, well, you’d be fortunate if you could even get a tissue in it.  No thanks.  I did win that round though because one of our bridesmaids’ dress straps broke during the reception.  You’d never guess who was the only person with a sewing kit?!

In the summer, I was pretty bad, as you know, and I found that I just couldn’t carry my bag anymore.  The smaller packs, especially, have very soft backs, cushioned and padded for all sorts of ergonomic comfort but not designed for support.  I needed a firm back.  There was also the small problem that about three inches of the seam had come away from the bottom and was threatening to decant most of my bag contents at any given moment.  That and the straps were virtually completely threadbare.  That and the fact my husband had emptied an entire cup of stinking coffee all over the year before.  That and it was actually at least three or so years old too.  It’d been a lot of places, seen of lot of action and wear.  It had to be retired.

I get sentimental about such things but as I couldn’t even carry anymore, this time I didn’t really get a choice.

I transferred my stuff into a small camera backpack that we have because those have nice, firm backs.  But they’re so padded that you can’t get much in them, regardless of their actual size outside.  That and it’s a bag of two halves so you can’t get anything big in it (like a book or a folder or your knitting and definitely never any shopping).  And when you do want to get into the bottom half, you have to unzip it all the way round and the whole thing sorts of falls apart, flapping wide open and threatening to spill most of your belongings.  The camera bag had downsides.  Besides, I don’t really want to look like I’m carrying around a fancy camera or something tempting to twitching fingers anyway.  And cameras bags are expensive too, there’s no point wearing this one out and not having it when I actually do need a camera bag.

Eventually, I conceded.  And bought myself a new bag.  Bags have got very expensive of late and it always seems a waste to spend money on myself.   I couldn’t go with the cheapest option because I now have very specific needs.  I need a firm, rigid back.  But preferably not accompanied by a huge bag, rucksack-style.  It’s just OTT.  Several ways.

I found my perfect bag in my usual outdoor shop, they keep me in replacement walking stick feet too.  (Another extravagance that I grumble over on a regular basis, every three or six months.  And I lost a virtually brand new one in some nasty sucking mud in the dark the other week!  Husband couldn’t believe it when I dragged him back to the scene of the crime, walking stick foot abduction, at the first possible opportunity to root for it.  To no avail though.  I’m still indignant at that mud bank).

Having a new bag is one thing, the next is the complicated and long process of transferring the contents.  I have spent a very happy evening stockchecking, inventorying and transferring.  My life is back in one bag, with plenty of space for knitting and shopping and all the goodness knows what that only I seem to be able to accumulate.

I decided to take a photo, first, because I do that and second, because if anyone is ever stupid enough to try crawling away with my overloaded bag then I would like a record of what was in there for replacement, police and insurance purposes.  (Yes, I do have one of those minds that can imagine all possibilities, usually negative).  And because I’m the kind of person who not only manages to write a mere one thousand words about their new handbag but takes a photo too, you know you’re going to see it too.

(I tell you what, those mesh purses that they sell in the cosmetic section of the supermarket were genuinely the next best thing since sliced bread.  My bag was a sticky shambles before I invested in a containerised solution).

So say hello to my new bag:

(Mine is all black however because it was half the price of a fancy coloured one that will probably just show the dirt anyhow).

But the green/grey combination does allow you to see the special back support design:

Nifty, yes?

And do you really want to know what I’ve managed to stash in there?

You sure?

I wonder just what my bag says about me?!

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FO: We All Scream …

What’s the biggest thing that holds you back from starting, from accomplishing, from finishing, from achieving?  Fear.  Fear is our biggest enemy and we all know it.  But where does the fear come from?  Sure, we are confronted, bombarded even in this day and age, by things that we are told are scary.  But fear is still a choice.  I know that sometimes I choose to take risks that might be unacceptable for some people, for example I’m quite happy to walk home in the dark, and the reason that I do that is because if I stop to become fearful, fear will overtake me.  I’ve been on that very slippery slope before and I don’t want to go there again.  I choose not to fear because fear is actually a greater burden, an unacceptable risk.  For me.

Fear is still a big part of my life though.  And I know that I generate that myself because my biggest fear is that of failing.  I joke that I am a failed perfectionist.  Chronic health conditions certainly temper how much organisation, control and mastery I have over my own life but to be completely honest, I’m not good at it.   I can line CDs up alphabetically and organise my wardrobe by the rainbow but it’s a token effort, an attempt to stop the tide.  The tide of chaos, the tide of life.  I am overwhelmed.  But I still expect an awful lot from myself.  Too much sometimes.

When I start out to do something, I want it to be the best, I want perfection.  I expect perfection only from myself.  I am tolerant, indulgent even of others.  It’s just like that mystical perfection that we crave for our bodies, it doesn’t exist, it isn’t attainable.  I start over thinking the project, I get bogged down in details.  I overwhelm myself with my standards.

The thing is though that if I let go of that fear, if I don’t give into that crazy perfection desire, I still end up with something pretty good.  Something that perhaps people with different Minds to mine might feel pride in.  (I am still assessing and debating my relationship with the dread Pride, I will keep you posted if and when I discover that there’s a balanced approach).

I have to find the confidence to work through the slump, as L.M Montgomery may well term it, and to continue on.  Sometimes I give up too early.  Worn out, disheartened, crushed.  But as you know, self-confidence is not something that comes readily to me, I have long had too little self belief to find the motivation, the hope and the strength to go on when I start to fear that I have failed.

This is why this project has taken most of the year to come to fruition, although of course the Bad Patch didn’t really help either.  It’s hard to keep on top of your projects when you can barely lift the needles.  And when I could physically knit, there was often a real psychological block holding me back.

But this time, I conquered.  I didn’t let the fear win, I didn’t let it make me give up.  I fought through it.  I put the project aside when it all seemed to be going disastrously wrong and came back to it when I was ready.  Even when it didn’t turn out how I originally envisioned, I took a break then made my peace.  I’d still made something worthwhile.  Something that I hope will put a smile on a child’s face.  And you don’t need perfection to do that.

Actually, when I look back, this project has all been about facing new challenges and allowing myself the time to grow into them.

It started nearly two years ago when my husband bought me some knitting books that I had had my eye on for quite a while, part of a series called Twenty to Make, it was the four on knitted food that this idiosyncratic knitter just had to have.  You have met some of the patterns from those books when I made my Lunchbox back in the summer.

I loved the books, of course, but there was one major problem.  A lot of the patterns required knitting in the round.  I couldn’t knit in the round and was pretty sure that I never would be able.  So I bookmarked the patterns that were achievable and forget about the others, albeit regretfully.

When I knitted Fruit and Fairy Cakes (those patterns were taken from various magazines instead) for a young friend of mine and they were rapturously received, I knew I had the perfect victim for further creations.  But what could I make with my limited abilities?

Well, this spring, as my confidence started to grow a little, I learnt to knit in the round.  In slow baby steps, of course.  But there was something that I definitely knew that I wanted to make for my friend.

I cast on in March.  I knitted during car journeys.  I knitted during a chillier than expected day at the beach.  And within a couple of months, I had a half-dozen ice cones ready for filling.  But those cones also tell their own story of my growing confidence.

The first cone that I cast on, I couldn’t work with so few stitches on the needles so I had to start a few rows higher up and even the I couldn’t manage the stitch pattern as well, so the first cone also has a section of stocking stitch:

The second cone shows that at least I was learning.  Yes, I still had to start on a higher row but this one has the stitch pattern:

After that, I pretty much had the beginnings sussed:

(That’s now a chocolate cone, in case you were wondering.  They’re all high quality waffle cones which are my favourite.  There is something classic about the golden polystyrene cone that comes with a Mr Whippy, a 99, but the waffle cone beats that hands down every time.   Actually, I think I prefer the cone to the ice cream, if that’s not a little too weird.  Although ice cream is a very good partner to the cone.  If there’s just ice cream available then I sprinkle over corn flakes or some other breakfast cereal just to make it bearable.  That might be completely weird.  But it’s genetic, my father did the same. (I also used to save the end of my cone (the best bit) for him when we were out without him when I was little.  That might make me utterly, irredeemably weird but also very generous and loving).)

The other problem that I had with the cone pattern was that in the image in the book it looks like the ice cream cone is finished with a possible ridge of garter stitch then smooth stocking stitch.  I presume that this must be folded back on itself to make a ‘hem’, if you will, because stocking stitch always has the distinctive, curled rolling edge.  That’s not a problem, the problem is that when I worked the pattern instructions, I ended up with something looking like moss/seed stitch (can’t remember which is which, the definition is a little shaky).

I wasn’t liking that too much so came up with Plan B.  Only thing is, I’m till not sure whether Plan B is garter stitch or reverse stocking stitch because I was purling in the round.

By May, I was onto the ice cream itself.  This is where I met the most problems.  I tried the ice cream pattern in the book and really couldn’t get on with it.  So then I reverted to the basic rectangle that made the fairy cakes.  I had to make a few versions until I got it the right size but then I was off.

I can come up with plenty of ice cream flavours, imagination is not something that I’m short of but there’s always the Internet for far too much inspiration too.  The limiting thing is the way yarn colours behave (they don’t segue in a natural way) and that there only so many colours in my stash.

I wanted to make lots of different flavours that could be fitted into the cones according to a child’s, or their customer’s, taste.  I love mix and match in toys, I don’t like things being rigid and prescriptive.  And there I ran into another problem.

Knitted ice cream doesn’t stay cooperatively in the cone.  (It’s possible that there are various experiences to suggest that real ice cream doesn’t always stay happily in the cone either).

I was miserable.

I had failed.

My ice cream wouldn’t work.

I was miserable some more.

I decided that I would distract myself by knitting up the bag.

I had big plans for that bag.

Patchwork.  It is apparently possible to knit all the different colours together using intarsia rather than making lots of squares (ish) and sewing them together.  I hate sewing.

I say apparently because I never got there.  Too many tangles and not enough space, energy or patience.  (This was at the height of baby bird raising too, remember, my knitting and me had been relegated to the bedroom).

I was miserable.

Now my bag had failed too.

I finally picked myself up again.

Eventually I went for Plan B in the bag department too.  Stripes.

But I did cleverly design a gusset for my bag.

And then sewed it up the wrong way.

(Hey, what can I say?  I’ve been Tired this year).

I also decided to go into a little appliqué work and stitch letters on my bag.  (Well, I had done knitted motifs on the previous two bags, it was time for a change).

Did I mention that I can’t sew?

I can, however, create giant letters in a word processing program and print them then use my persuasive powers to get husband to cut them out accurately both in the paper and in the felt.  This is very fiddly job, if you thought wallpaper was the way to damage a relationship then I suggest you think again.  Felt letters are a definite make or break for any relationship.  I think we’ve survived.

There are some cracking words in English but one thing that the language really isn’t any good at is shop names.  I went overseas to find the wording for my storage bag, choosing a language that reflects the receiving family’s own cultural links and my own (literally) sweet memories.

I did that stitching myself, all by myself-some.

I was feeling better.

It was time to start making decisions about those ice creams.

They were going to have be sewn into the cones.

And I was only going to have half a dozen, the other flavours will have to wait for another time.

I lined the cones with upcycled thin plastic and then stitched the ice creams down.

Six different flavours in two types of cones.  I think it may even be vegan friendly ice cream but it’s not entirely natural, I did make them from 100% acrylic after all.

Málaga Ice Cream in Chocolate Cone, Stracciatella Ice Cream in Waffle Cone, Chocolate Chip Ice Cream in Waffle Cone

Strawberry Ice Cream in Waffle Cone, Lemon Sorbet in Waffle Cone, Mint Choc Chip in Chocolate Cone

And the title of this post?  My father always called ice cream ‘scream’ in honour of his little refrain, We All Scream for Ice Cream.  We never knew where he’d got the expression from until very recently.  I found a little beach hut with the same slogan scrawled on its front.  This was clearly not just something in my father’s head.  I took to the internet and we finally found its origin.

Do you scream for ice cream?

(And my sincere but unrepentant apologies for another humongous post on knitting, sometimes even small things require epic journeys.  Thank you for travelling with me on this one).